A few years ago, Tahira was diagnosed with GNE Myopathy, a rare genetic neuromuscular disorder that progressively weakens muscles throughout the body. Affecting only one in a million people, GNE Myopathy is little-known and often misunderstood, leading to delayed diagnoses and limited support for those affected.

The condition causes muscle weakness and wasting, typically starting in young adulthood and progressing to impact muscles across the body and ultimately resulting in significant physical challenges. People with GNE Myopathy generally experience increased disability and loss of ability to walk in later life.

This fundraiser supports Muscular Dystrophy UK, an incredible organisation working to advance research, improve resources for patients and create a more supportive environment for individuals and families impacted by muscle-wasting conditions.